The GetPreCiSe Center (Genetic Privacy and Identity in Community Settings) is an NIH Center of Excellence in Ethics Resarch. We founded the center based on the observation that the debate about genetic privacy and identity has been based (a) on an incomplete understanding of the influences on the actors involved in genomics research and translation and (b) on possible, rather than probable, risks. Moreover, research has typically focused on what individuals say, effectively minimizing the role of community and social influences in shaping attitudes toward privacy. GetPreCiSe integrates a diverse group of interdisciplinary scholars and community advisors to collaborate and develop a more comprehensive understanding of these worries and the factors that influence them, to model actual risks to privacy and identity, all of which will be used to inform policy.
GetPreCiSe is guided by four interacting goals.
1. To enhance our understanding of the impact of threats to privacy and identity in genomic data. Concerns about privacy and identity involve the 1) Individual, who has been the focus of most policy debate, as well as 2) Families, 3) Communities, and 4) various Social institutions, each facing its own distinctive calculus of risk and benefit. All of these are subject to an array of influences.
2. To measure the efficacy of efforts to protect privacy and identity by 1) Communities, 2) IRBs, 3) Institutions that collect, hold, and share genomic and phenomic data, and 4) Law, using quantitative, analytic, and legal analyses.
3. To develop models to quantify the probability of genomic data re-identification and harm that take into account the set of influencing factors and efforts to protect data, as well as the costs that attacker(s) would incur to mount the attack and the potential benefits and penalties that the attacker(s) might receive with a successful attack.
4. To address concerns by developing interventions that provide certainty and enhance institutional trust, as well as policy solutions that could deter intrusions of privacy and misuse